From the NY Times:
New guidelines for cervical cancer screening say women should delay their first Pap test until age 21, and be screened less often than recommended in the past.
The advice, from the American College of Obstetricians and Gynecologists, is meant to decrease unnecessary testing and potentially harmful treatment, particularly in teenagers and young women. The group’s previous guidelines had recommended yearly testing for young women, starting within three years of their first sexual intercourse, but no later than age 21.
Arriving on the heels of hotly disputed guidelines calling for less use of mammography, the new recommendations might seem like part of a larger plan to slash cancer screening for women. But the timing was coincidental, said Dr. Cheryl B. Iglesia, the chairwoman of a panel in the obstetricians’ group that developed the Pap smear guidelines. The group updates its advice regularly based on new medical information, and Dr. Iglesia said the latest recommendations had been in the works for several years, “long before the Obama health plan came into existence.”
There was actually a really good piece on NPR yesterday about the decisions behind the breast-screening guideline changes that explained the reasons for the change in the guidelines. According to one of the doctors, the problem people are having understanding the reasoning for the guidelines is that the statistics are saying something that is counter-intuitive and goes against our long-held belief that earlier detection is better in regards to cancer. Here is the relevant snippet:
BLOCK: We have been getting a lot of email from listeners, as you might imagine. And a number of people have stories of their own. And I want to read a couple of those letters. This is one from Wendy Hickey(ph) of Pittsburgh who says that three years ago when she was 45, a mammogram identified suspicious tissue in her breast. She had a needle biopsy excisional surgery and is now cancer-free, taking daily tamoxifen.
And Ms. Hickey writes: I can’t imagine what would have happened if I had delayed my mammogram for five more years. But I feel safe in guessing that the outcome and treatment would not have been as positive.
Dr. Lerner, what would you say to Wendy Hickey about that?
Dr. LERNER: If people can take away from this show the notion that what she’s saying may be true but may not be true, I think they would learn a lot.
What the data is showing us is that this woman, even though the mammogram found the suspicious cells early on, the argument is that her overall prognosis would not have changed. She would have gotten treated then as aggressively or more aggressively as when it was found by mammogram, and she would have done exactly the same.
That’s what the point is of this data. It’s hard conceptual leap for people to make, even for a doctor, but that’s what the data show.
BLOCK: And you would assume though that the earlier you find something, the better your results would be.
Dr. LERNER: That has been the guiding principle of cancer research since the early 20th century, but the data for some cancer shows that things are not that simple, and that’s what we’re trying to deal with now.
You can listen to the whole piece here. I thought it was interesting and worth the time.
aimai
People have a really hard time grasping that all cancer treatments are not the same–therefore the moment of instigation of treatment may or may not have as big an impact for one cancer as for another. On the breast cancer thing I have no trouble believing that the immense cost of false positives (emotional, social, physical, economic) far outweighs the actual number of lives saved by early detection of the (few) cancers that are detected using this method. I can well believe that women who get regular checkups and are aware of their bodies would, in the ordinary course of the year, detect a cancer at the still treatable stage. And the treatments aren’t that good.
Cervical cancer, to me, has a totally different place in female health care. Its good for women to get a yearly gynecological exam–and the test itself is not particularly painful or invasive, takes only a minute, probably doesn’t cost that much. In addition, cervical cancer is a killer. But I believe it can be effectively treated and the earlier the t reatment the better. Telling women not to get a pap smear is like telling them not to bother with the gynecolocial exam. And that in itself is a very dangerous thing. We should be looking at ways to create strong bonds between people and their primary care physicians/internists/gynecologists not making the decision about an annual physical entirely up to the discretion of the patient and the insurance company.
aimai
Eric U.
I’m finding it hard to believe that waiting 5 years would have resulted in the same outcome. Ms. Hickey probably would have been treated even more aggressively seeing as how the cancer would have been much more advanced.
Lurked
I haven’t looked at the data and I am not a physician, but I’d not be surprised if the studies show that by the time a cancer can be seen on a mammogram, especially in younger (pre-menopausal) women with dense breast tissue, its course is already set. What we take to be “early” detection in many cases is still years after a cancer starts to grow.
I also have read that most breast cancers are discovered by the women by feeling a lump, not by mammograms. The efficacy of mammograms has long been suspect.
Steph
Prostate cancer screening has also been in the news – apparently sometimes cancers are not harmful, or even go away on their own. The trick I guess is knowing which ones are innocuous…
Bob (Not B.o.B.)
See, this is why Obamacare won’t work.
Good News for Conservatives.
Keith G
These decisions make a lot of sense when spoken of in terms of mortality per 10,000 cases
Still:
…is a worrying notion to many individuals. What is one to make of the possibility that your loved one might be one of the few whose life would have been saved by earlier detection?
But is this a bit over blown as these are purely voluntary guidelines?
sparky
what i find interesting about this is that it’s really the same cognitive issue seen in politics: our brains are wired to make sense of what is in front of us, so to speak, not to think our way past what we perceive.
will our brains catch up with what we’ve wrought?
Lurked
Aimai,
I have been told by at least one gynecologist that cervical cancer is an extremely slow-growing neoplasm. It takes years for dysplasia to convert to precancerous cells and years for the precancerous cells to become fully cancerous. I have had several false positives due just to atypia, which isn’t even usually significant, resulting in a rather unpleasant procedure twice now.
Most women who develop cervical cancer don’t have steady access to health care.
Mary
The timing of all of this new information really could not be worse. Coming on the heels of the the Stupak-Pitts debacle it does seem like a weird pile-on.
I actually heard this NPR piece last night and I found myself really conflicted. I found myself wishing that they had brought in a woman scientist/doctor to argue the point of view that Lerner espoused, which I’m sure is discrimination on my part, but as a woman in these politically charged weeks it’s really hard to listen to a man tell me that I should stop wasting resources worrying about my health. The whole thing just felt a little too “don’t worry your pretty little head about things like cancer.”
I’m sure that the science backs up Lerner’s position, but it still just didn’t sit right with me somehow.
BethanyAnne
@Keith G: Not really. Insurance companies may stop paying for earlier screenings because of these guidelines.
BR
Overtesting has well known problems if you look at the conditional probabilities:
http://en.wikipedia.org/wiki/Confusion_of_the_inverse
Napoleon
@Mary:
The timing actually made me wonder if the government board that made the mammogram recommendation was stacked with right wing party loyalists who intentionally timed this to undercut Obama (some what similar to what has been going on with the civil rights board that is now looking into stuff like racial discrimination against whites and how blacks have been steeling elections).
WereBear
I think it’s past time to revamp our whole approach to cancer. Early detection makes five year cure rates look better. But is that all it does?
Some people have battled through the treatment, are alive, are grateful, and get the heebie jeebies at the thought that catching it later, they’d be dead now. And I totally understand that.
But then there’s my husband’s aunt, whose ovarian cancer was caught at an early stage, but came back, and was chemo’d and radiated and made those five years absolute hell… and I discovered that most ovarian cancer is that way, unless it’s platinum sensitive. So they go all out in this hideously expensive and hideously painful course.
When she could have had the same five years much more comfortably, and with higher quality of life. However, that would mean the doctors admitting to this tough truth. And they won’t do that.
Comrade Scrutinizer
@Keith G:
__
I’m not sure I disagree with the science and the stats, after talking this over with Comrade Ms. Scrutinizer, who is a family nurse practitioner, but at the same time, don’t be fooled by the nature of “voluntary” guidelines. If ACOG adopts them, then the insurance companies will treat them as carved in stone and use them as a reason to refuse payment for more frequent testing.
Keith G
@BethanyAnne: Yeah, there is that and on various programs, I have heard arguments on both side of that possibility. Of course, we should expect corporate issuance companies to make the wrong moral choice. But then, what would be the most moral choice?
dr. bloor
@Eric U.:
The point of Lerner’s comment is that we don’t really know this to be true.
That said, I’d be surprised if those guidelines get any traction on a day-to-day basis. Doctors’ and patients’ faith in actuarial data tends to plummet precipitously when confronted with the question in a consulting room.
kay
I think we have to stop looking at more care as better care. I don’t think outcomes justify that.
The point here is quality care, not more care. The two things are not the same.
The people who are looking only the savings at the insurance end are missing the delivery end.
These tests are profitable. There’s an incentive to offer more of them. That has to be considered. We can’t talk about that, or we’d be admitting what everyone knows is true: that we have a fee for service profit model at the delivery end.
Testing is particularly profitable, because there’s a one-time cost for the equipment, and then it’s just a fee machine.
I think if we’re going to look at insurance company profit incentives, we have to look at the profit incentives of the professionals who bill insurance companies, the provider.
It’s dishonest to ignore that side, and just advocate piling on care, with no evaluation of whether it makes sense.
PurpleGirl
I agree with Mary that the timing of the guidelines release and the use of male doctors is bad and to me it just seems more than a little condescending. Also, they said that women should not be taught to do breast self-exams… wtf, we should completely depend on the doctors now. More time between tests and don’t examine yourself, you don’t know what you’re looking for. The self-exam was/is a powerful tool for women to take care of themselves. And ultimately these guidelines lead to decisions about what costs will be covered by insurance or not.
Capri
This is very much like the reverse of eliminating the death penalty or releasing non-violent offenders. All the data shows this would help, but politically it’s seen as being soft on crime so no one has the stones to suggest it. This recommendation looks like it’s hurting women’s health, but it doesn’t. Finally someone had the courage to stick with the science despite how it sounds.
The recommendations might have changed recently, but the science hasn’t. Ten years ago it was known that screening women in their 40’s for breast cancer wasn’t going to change anything. It might catch slow growing cancers sooner, but those slow growing cancers may take decades to cause problems if they ever do. The really hot cancers are going to kill women no matter when they’re detected.
Several years ago I read all the available literature and decided for myself not to have a mammogram until I turned 50.
Persia
@Eric U.: It depends on how slowly the cancer grows and how much difference early treatment makes– as they say in the quoted article, it’s almost counter-intuitive. But that’s why we do studies.
Keith G, I also think your personal health history and cancer risk makes a difference– does breast cancer run in your family, have you had abnormal pap smears before, etc.
ericvsthem
@Mary: I’m actually surprised that some Wingnut hasn’t already tried to make a connection between the findings of this study and goverment death panels denying mammograms and getting taking decisions away from patients and their doctors… ugh.
Pigs & Spiders
Our society’s reactions to these things make my head spin. One study suggests that we’re testing inefficiently (in this case, too often) for a particular disease and that there might be a more statistically efficient method of doing it, and everyone’s head pops off. On the other hand, hundreds of studies conducted over many years showing the addictive qualities of nicotine in cigarettes or the relative harmlessness of marijuana, and the country acts like the studies never, ever happened.
Persia
@Pigs & Spiders: It’s because we don’t believe in science in this country. We believe in anecdata and the Bible.
Cathy W
@Lurked: Most women who develop cervical cancer don’t have steady access to health care.
This is very true. I actually heard about the change in guidelines a couple days ago and did some research; one stat that leapt out at me was that 50% of cervical cancer mortality is in women who had never had even a single pap smear before their diagnosis. There would be a huge benefit to making medical care more available to these women.
Which led me to wonder: what is the compliance rate for yearly mammograms in the age 50-59 and 60-69 groups right now? Would mortality in these groups decrease if there was a higher compliance rate with biennial mammograms?
FWIW, Orac, who is a surgeon specializing in breast cancer surgery, has a thoughtful post on the guideline change, and it looks like he followed it up with one on the general public’s reaction.
Keith G
@Persia: Oh, I do agree. Cancer has shadowed the females of my family like an Alaskan governor stalking a moose.
That said, those family members still alive aren medical practitioners (not me) and I hear a lot about treatment outcomes and the like.
Liz
@Lurked:
I have a dear friend, now suffering from breast cancer at 42 years old, who had aggressive cervical cancer develop in less than 6 months. Not the norm, I know, but it does happen.
The thing that really irks me about all this is that women should be able to make these decisions for themselves. If I want to go through what some may consider anxiety and stress over a potential false positive, that should be up to me and my doctor, not some panel or insurance company. Don’t patronize me and tell me it would make me “worry too much.” That infuriates me. I am 45 this year and have had a mammo every year since turning 40, get a pap every year and have since I was a teenager, and will continue to get both on a yearly basis, even if I have to pay for them myself. Not getting them yearly, at this point in my life, would cause MUCH more anxiety.
Observer
Overtesting is not the problem.
It’s the hospitals and doctors who overtreat.
Overtreating reflects the problem we have with our system that specialists drive the most revenue and are paid like sports celebrities.
Overtesting reflects the problem we have with our general practitioners who are incented to do little more than keep the waiting room as full as possible while billing back even less.
Our system could overtest to the extreme and it would still vastly improve health outcomes and dramatically reduce consumer costs simply if certain hospitals and physicians didn’t treat every positive as an excuse to buy a new car.
THAT is why the last two rounds of “don’t test, it scares the poor dears” is so offensive and immoral.
Don’t believe the hype.
Persia
@Liz:
But that’s why putting the recommendations in for younger women is important; they don’t have a ‘baseline’ yet that feels safe for them. If they’re just as safe having fewer paps and unnecessary surgeries, than, you know, yay.
kay
@Pigs & Spiders:
The recommendations change. They were treating women with hormone replacement therapy for years, and they reversed, 2 years ago.
No one was upset, except perhaps those women who had been receiving hormone replacement therapy that did more harm than good, for years. No one said it was a plot to deny women health care.
They reversed on some back surgeries, just this year. More harm than good. They don’t work.
They’re going to revise prostrate cancer screening recommendations here shortly, because they’re testing too much.
In my experience raising kids, pediatrics is littered with reversals. Tonsils, asthma, ear infections. All changed. I don’t think doctors were acting in bad faith. They were treating and testing according to guidelines, and the guidelines changed.
Napoleon
@ericvsthem:
NPR had a Republican congressman on this morning basically making that connection.
Keith G
I am curious about something though. First let me disclose that I would rather the U.S. had a single payer system for medical care.
Ok, pretending that on Jan 20 of this year we magically transformed into a single payer system, how would that system deal the such a change in recommended procedures as we have just seen?
kay
@Persia:
There are professional guidelines for all treatments and therapies, and then there’s the doctor’s discretion.
This isn’t limited to guidelines for women.
I don’t think it should be portrayed as “patronizing”, anymore than the revised guidelines for back surgery were “patronizing”, or hormone therapy, or any of the hundreds of treatments and tests.
kay
@Keith G:
But, Keith, is you have a family predilection for breast or cervical cancer, why should I follow the guidelines set out for your worst case?
I have a family predilection for diabetes. I’m careful about what I eat, because I don’t want to be a diabetic older person. I don’t expect you to worry about preventing or detecting a disease you probably won’t get. , because that doesn’t make sense.
PeakVT
Discovering and implementing non-intuitive medical practices would be a lot easier if we had a single-payer system.
Jus’ sayin’.
Bad Horse's Filly
The best thing I heard from a TV Doc was that this should be a chance for us to admit that mammograms are poor screening tools and put the money saved toward more effective screening tools. This point seems to have been lost on most of the talking heads I’ve seen. This report is saying mammograms are not an effective tool and we should be working toward something that works better on more people.
But gosh, that would be rationing care….
Keith G
@Bad Horse’s Filly: Yes. A segment on PRI’s The Takeaway yesterday (can be downloaded) did a good job of covering the same ground.
Belafon (formerly anonevent)
Just a question for everyone: Are we supposed to trust the scientists when the evaluate data or are we not? I’m being serious. What they are recommending may go against years of training, but blood letting was also an acceptable medical practice at one point.
As for the idea of testing, I give you a good tutorial on Bayes theorem. Like aimai, I think you have to take into account the costs of false positives, though the ability for the disease to grow quickly has to be taken into account, which leads us back to listening to the experts.
kay
Of course, they’re getting it wrong. They’re calling this “new government guidelines” but they’re not:
“The advice, from the American College of Obstetricians and Gynecologists, is meant to decrease unnecessary testing and potentially harmful treatment, particularly in teenagers and young women.
Persia
@kay: I don’t think you’re actually replying to me?
Belafon (formerly anonevent)
@PeakVT: And implementing practices that are geared more towards each individual patient ,rather than the tendency to try to treat as many people as possible with one approach, would be easier to implement under a single payer system.
Uloborus
Thank you, John. This is the most difficult element of science for no-scientists to accept. Logic and instinct mean nothing in the face of evidence. If it makes no sense to you that you should screen less, when the evidence comes in and says screen less, you go with the evidence. That is the entire point of the scientific method, medical or otherwise. Even scientists often can’t deal with it.
From a medical family and having a career in health care, this happens all the time. ALL the time. One of the big indicators of how good a doctor is is how well they keep up with the constantly changing guidelines and research. Medicine is huge and subtle and apparently self-contradictory, and doctors are basically diagnostic machines to process huge amounts of complex data.
Seriously, these guidelines change constantly, and don’t have to make sense. Anti-depressant make depression worse? Yep, if you’re also sometimes manic. How does that work? Don’t know, don’t care, the research shows it happens and we have to reverse years of treatment guidelines. And the people who make these guideline decisions have little or no stake in what the guidelines actually are. They’re paid to analyze data for public policy, not to order more tests.
GReynoldsCT00
What you said. As a women who has been dealing with cervical problems since age 38, the thought that cost cutting (and we KNOW the insurance companies will dump whatever they can given the opportunity) could dictate my care is terrifying to me.
donovong
@Uloborus: Word. Now. Would you please make yourself immediately available to NBC Nightly News, CNN and the other bed-wetters? They are responsible for most of the histrionics over this stuff.
kay
@Uloborus:
Thanks for that. They were treating my 90 year old father for a battery of diseases and testing him for a battery of diseases, and he was miserable. He was taking 9 prescription medications a day. His balance was off, he felt drowsy, he stopped doing everything he likes to do.
The guy who delivers his firewood finally called me. He said “he’s a mess”. We took him and his medications to a different doctor who had read the newest stuff on slow-growing prostrate cancer, and they stopped treating it.
He’s back to stacking firewood, and he can read a book without falling asleep. He’s happier.
I don’t assume it was profit-motivated. It was just really aggressive treatment that ruined his day to day life, and had him spending 4 hours at the clinic every month.
Pococurante
I don’t see this as applied science. Their argument can basically be summarized “because sometimes patients are overtreated based on screening results we should screen less. And it just upsets the patient when they have to deal with real life in all its frustration and inconsistency.”
If over-diagnosis and overtreatment are the health risks, why does it automatically suggest we test less?
Why not consider that perhaps diagnosis and treatment should themselves be more effectively managed?
PhoenixRising
If most Americans had access to good primary care, taking a science-based approach to setting guidelines for testing would be great.
But since most Americans have lousy access to primary care, for reasons connected to for-profit medical practice as the norm, telling women that it’s okay to get screened for cancer less often is just wrong.
Yes, actuarially, it’s the right policy–but as so many tired moms don’t find time to see a doctor at all in their 30s and 40s, taking away what may be the only medical care they bother to get is irresponsible.
twiffer
one of the primary reasons, i think, the masses have problems with science is that it changes. people don’t seem to understand that scientists, doctors, etc. changing recommendations or deeply held theories, on the face of new evidence, means it is working correctly. as we gain new data we change our conclusions to support it. that’s what science is supposed to do.
change, however, can be unsettling. conservatism is against it, by definition. religon, tradition, culture itself is set against change. so, if you are trained to resist the idea of change, having authorities mention, every few years, that our view of the world, of medicine, of anything was incorrect and based on new data we are revising it…well, the common reaction seems to be to think scientists don’t know what the fuck they are talking about. it’s the wrong reaction, but that seems to be the reason for it.
Xanthippas
I must be missing something. How does any of this undermine Obama or health care reform?
donovong
@Xanthippas: Because the know-nothings are using this as “an example of the slippery slope toward government health-care rationing.” For example, Marsha Blackburn was given a soap box from which to spew this shit on NBC News last night.
satby
Being left out of the conversation is the negative outcome of too much unneccessary radiation in all the tests done for screening (like mamograms).
And as a woman who had false “positive” results for years on mamograms, with the resulting hysteria by the medical professionals and gobs of painful followup testing only to have them say “oops, you’re fine”; I totally welcome the new guidelines for younger women. They aren’t the guidelines for younger women with a family history or high risk of cancer, they’re the new guidelines for the general population. Because the outcome for me of all that false positive testing was that I quit having mamograms entirely. And I know I’m not the only one who’s made that choice.
chrome agnomen
wingers will probably argue that these cancers should be carried to full term. “why it’s preposterous that women should be allowed to electively abort these viable, living tissues. why they’re using these procedures as nothing more than a form of death-control.”
//////
RSA
I just picked up a copy of David Hand’s Statistics: A Very Short Introduction, which contains a nicely relevant example of what he calls “elementary misunderstandings of basic statistics”:
And…? The answer, which seems obvious, is not really appreciated by a lot of people:
(It’s a good book, targeted at non-mathematical, even non-technical readers.)
Steph
@kay: Kay, so great that you got your dad’s treatment straightened out.
I read the other day about a 90 year old in a nursing home who was put on a low fat diet because she had “high cholesterol”. She was miserable. Thankfully, when the family complained, the doctor changed her orders.
I’m really, really suspicious of cholesterol screening and statins…but that’s probably another thread.
Joel
@Steph:prostate cancer affects all men by the time they reach their 90s. That is, a 100%
MattR
It is kinda interesting to see some of the same crowd (yes, i am generalizing) who criticize/ridicule the anti-vaccine folks or the anti-evolution folks now having doubts when the subject is one that is closer to home. This is not as cut and dried as those subjects and the cost-benefit analysis is not clear and can be debated, but a lot of the arguments I see are Colbertian in nature (made from the gut rather than the brain).
kay
@Steph:
It was odd. The whole thing. He’s avoided doctors his whole life, but once he retired, everyone was telling him to go. So, he went, and went and went. He gets the meds mail order from the VA, so it was easy to just go along, and he has no experience second-guessing doctors. He ended up with a general and a specialist, and there’s nothing really wrong with him.
He has some shortness of breath, because he smokes. They were treating him for the shortness of breath, and the medicine made his heart race, so he was afraid to exert himself, so he just stopped doing anything. Smoking all the while.
I felt as if no one asked him anything, and he’s not a talker. He drinks black coffee all day, and has my entire life. I have no idea how massive amounts of caffeine interact with all those meds.
Anyway, he has a doctor now who just gives him a standard physical and has him off all the meds, and he’s back to normal. He was painting his kitchen chairs yesterday.
Orac
For those who can’t understand how finding cancer earlier might not lead to improvement in survival, read up about the concepts of lead time bias and length bias:
http://scienceblogs.com/insolence/2009/02/the_early_detection_of_cancer_more_compl.php
Dr. S
We all hope that recommendations for screening, detection, and treatment will continue to change as more is learned. Many early recommendations were made by some guys with diplomas sitting around and saying what sounded good to them. Of course, these kinds of recommendations were bound to be overturned. Authority figures invest their prestige in their recommendations, and it is an inevitable fact of human nature that they and their followers become true believers in yesterday’s status quo.
Let’s hope that widespread HPV vaccination will lead to further changes in cervical cancer screening in the next few years. Let’s hope that improved anti-HPV measures lead to cervical cancer becoming so rare that screening becomes unneeded.
Liz
@Steph:
I am astounded by the amount families who insist on all kinds of invasive treatments for the elderly. We’re going through it with my mom, and it’s a real struggle. We aren’t meant to live forever, and the end should be comfortable and dignified. Treating a 90 year old woman for high cholesterol? Yikes. At that point I’m going to take up smoking and drinking heavily, if I’m still around. :)
Sorry for the OT post.
debbie
It’s unfortunate that so many media clowns are taking the mammogram findings out of context.
The findings concern women 40-49, but when critics slam the findings, they don’t include the proviso that the findings apply to those women who are “at low risk.”
I watched the head of the American Cancer Society interviewed on Leherer a couple of days ago. He strongly disagreed with the findings, but he also said that the mammogram is a good test, but not a great test. He sees the need for better diagnostics.
Critics pooh-pooh the stress of false positives, but they don’t discuss the reasons for many of those false positives: the lack of adequate training for those who read the films. Requirements for certification are higher in Europe than they are in the United States, and there are fewer false positives in European countries than there are here. I’m guessing there’s a connection between those two facts.
A woman died here yesterday after a 10-year battle with breast cancer (Stephanie Spielman). She found her cancer early (with a self-exam) while she was in her thirties, underwent very aggressive treatments, and went through 4 remissions. But it still got her.
The real problem is that women have developed a sense of false complacency from regular mammograms. These findings prove that to be deceptive.
Emma
Waiting would have killed my mother. Waiting would not have killed me. We both detected our breast cancer through self-exam. We both insisted that they be checked even though our primary doctors, both of whom insisted that it couldn’t possibly be cancerous.
Self-exam is essential. I don’t give a damn how many doctors tell me otherwise. My mother would be dead if she had paid attention to hers.
Jon H
Note that they never @Lurked: “I also have read that most breast cancers are discovered by the women by feeling a lump, not by mammograms”
They also want to stop teaching women how to self-examine.
I’m starting to wonder if some arch-wingnut like Tom Coburn is running these panels.
Jon H
Blarg, ignore the first four words of my prior comment.
Joel
@kay: absolutely one-hundred percent correct. I can’t believe some are advancing the narrative that this is an ‘assault on women’ akin to the Stupak ammendment. It’s scientific data, not opinion. You don’t get to disagree with it, unless you have some valid criticism of the methodology.
That said, I think Lerner misrepresents what the data means when he says:
The real answer is that probabilistically, her outcome would have been the same either way. That means there’s an outside chance that the mammogram actually detected a malignant, treatable tumor that would not have been detected otherwise. There’s a larger chance that the mammogram detected nothing at all and that undergoing a chemotherapeutic regimen or god forbid, a mastectomy, harms her life expectancy/quality of life.
Worth mentioning that chemotherapy is not exactly a free ride. Even a relatively mild therapy like the estrogen antagonist/partial agonist tamoxifen (cited in this article) can have some nasty side effects (endometrial cancer, triglyceride accumulation in the liver).
kay
@Jon H:
I just want a rational discussion. More is not “better”, always.
It wasn’t “better” when they were over-treating kids for ear infections, handing out antibiotics at the insistence of parents, and giving kids these massive immunity to antibiotics.
That happened, and it had to stop.
There has to be some science-based middle ground. Do they under-treat some kids for ear infections now? Yeah. Probably. Is the answer to that blanket over treatment? No. That was a disaster.
kay
@Joel:
Thanks for that analysis. I think my experience with the health care system may be different than a lot of the posters.
I have been offered lots and lots of care, particularly by pediatricians, and I tried to measure cost-benefit, to my kid. I don’t take every recommendation.
I read my own chart. I ask them what treatment costs. I ask them what will happen if I don’t treat.
It seems to me, and correct me if I’m wrong, that there are “fads” in all fields. Education has them, I was a parent during the whole language versus phonics war, law has them, I know that from personal experience, and medicine does to.
I went through a period where every kid I knew was being treated and/or tested for asthma, and the same was true for a while with ear infections. That sort of peaked, and then it got more reasonable and specific.
kormgar
It’s all about false positives…when the base rate for cancer is extremely low (as it is for people under 50) false positives tend to overwhelm the actual incidences of cancer.
Mayken
Frankly I think this is about right. I’ve been screened every g-ddammed year since I was 16 for something I have a mind-bogglingly small chance of getting (cervical cancer) and had to wait until I was 35 to get my base-line screening for something I have a far higher chance of getting (breast cancer.) And now I have to wait until I am 40 to get my next mammogram because of the current stupid “guidelines” that mean my health insurance won’t pay for me to get one until then.
My mother’s cancer was first detected when she was 44 during her first mammogram – her doctor pretty much bullied her into getting it done after she had told him no for 4 years. If only she had listened to him earlier – her cancer was already in the lymph-nodes when they did find it. She survived the first round but 6 years later the cancer came back with a vengeance and she was gone in a few months. If she had had her screenings at the proper interval, they would have caught it much earlier. This may or may not have made any difference to her long-term survival (though I still think it would have but that’s just my opinion) but it certainly would have made her course of treatment much easier to bare. She could have had a lumpectomy instead of a mastectomy and lymphectomy. She could have had a less aggressive chemo treatments and perhaps would not have lost the job she had at the time due to being sick constantly. And I still think that we would have either delayed or outright removed the possibility of it coming back as aggressively as it did.
So, please, don’t anyone tell me that getting screened earlier wouldn’t have made any difference in the outcome.
Steph
@kay:
“I felt as if no one asked him anything, and he’s not a talker. He drinks black coffee all day, and has my entire life. I have no idea how massive amounts of caffeine interact with all those meds.”
This drives me bats – I have had heart trouble in the past (thankfully resolved), thyroid issues, and some other random events, and I had appointment after appointment and never once did anyone ask “What do you eat?”
BWthemoose
Cancer is not a “disease”. It is a collection of vastly different diseases, each with it’s own natural history, and timelines.
This is what makes generalizing and screening for it so difficult.
We all like to think we are “doing something” to catch cancer early, before it “spreads” and becomes “incurable” What we are finding out is what a slipperly concept that is.
Take prostate cancer, for instance.( a disease that has a strong history in my family– my grandfather died from it, my father was treated for it). One of the tests for it is the Prostate Specific Antigen (PSA) We were taught to screen for
elevations, and send our patients out for biopsies and ultrasounds and the like.
Over time , we discovered that it was not as simple as it sounded. Most men had natural elevations in their PSAs as they aged , and did not have cancer. Then we looked at their free PSAs, according to charts dealing with the probability that the elevations could be caused by malignancy.
Again we found some cancers, but we weren’t seeing the benefits in terms of life expectancy.
Finally the Urologists realized that the PSA was not a good screening tool. They also realized that if we lived long enough, most men would develop “malignancy” in the prostate.
They also discovered that prostate cancer was not one disease but several related diseases, and that prostate cancer in a 60 year old was very different from prostate cancer in a 90 year old.
But we have a hard time letting go of the need to “do something. One facility where I worked, we would draw yearly PSAs on the male residents, even if they were 19years old and had a vanishing likelhood of cancer. When I
pointed out that the tests were likely a waste of money, and that they were no longer recommended as a screening tool,
I was shot down by the director of nursing, whose husband had prostate cancer found by PSA
kay
@Steph:
The best medical care I ever got was around pregnancy. They really cover all the bases: nutrition, exercise, mental health. I went to a low cost clinic because of my financial situation at the time and I had this multi-discipline team of women ordering me around. The “diet woman” was clearly the leader. It was great, once you recognize they’re going to win this fight, and submit completely, and follow orders :)
They can’t prescribe any drugs, either. Maybe that’s it.
Luthe
@aimai:
I don’t know about you, but I find pap smears hideously painful, so I will be more than happy to go longer intervals without. Of course, I’m also getting the HPV vaccine, which should help decrease my chances of something going wrong, too.
Mayken
@Luthe: Yeah, I find it painful and invasive as do many, many of the women I know. The mammogram, in contrast, wasn’t pleasant but not even remotely as uncomfortable in all senses of the word. I’d much prefer to do a pap every two years and skip the black mail over getting my birth control scrip renewed every year.
Liz
@kay: But ear infections don’t kill you, and an antibiotic resistance that results from taking them too frequently can. I don’t see a similar correlation in breast cancer screening, unless I’m missing part of the report.
Is there a chance that the exposure to radiation from a mammo every year can give you cancer? I don’t know.
And whoever said up there that we need to improve the quality of screening is spot on.
Joel
@BWthemoose: actually all men develop some sort of prostate tumor, if they live long enough (iirc).
Joel
@Liz: Chemotherapy is more acutely dangerous than antibiotics. Even the mildest forms of chemotherapy can shorten your lifespan, reduce your quality of life, and so on. If you don’t have a false positive coming out of a screen, then you aren’t at risk for unnecessary chemotherapy.
sbjules
I just listened to a “Science Friday” discussion on this. Most interesting & although I can’t repeat the rationale, it made very good sense at the time I heard it.
Jackie
@Mayken: The new recommendation is for low risk women. The guidelines with your risk are different and might even justify an MR for screening. Too sensitive for low risk people but sees through dense breasts much better. Usually lands your doctor in the black hole of preauthorization and even appeal but worth talking about at your next visit.
EdithL
I’m a long-term lurker, but as I went through treatment for cervical dysplasia a few years ago I really wanted to comment on this issue. One of the drivers for the new recommendations is the relatively recent discovery that treatment for cervical dysplasia significantly increases the risks of future preterm birth. The increase depends on the study, the type of procedure, and the amount of tissue excised, but it ranges from a 1.5x to 3x increase in pre-term birth. The first excisional treatment for cervial dysplasia was a cold-knife cone, and they knew that it caused pre-term birth in future pregnancies. When the laser cone came along in the 70s, and the Leep in the nineties it was assumed that the risk to future fertility was low given that there was quite a bit less damage to the cervix than with a cold-knife cone. The studies that were done were all small, and none found a significant difference in pre-term birth rates. It wasn’t until a meta-analysis of the existing studies was done about 10 years later that a positive correlation was found. There were other exisional procedures, starting with cold-knife cones in the 50s to laser cones in the 70s prior to the introduction of the Leep. The first well-designed, sufficiently powered study to show an increase in pre-term birth was published about 5 years ago. There have been a steady stream of studies confirming the finding ever since. I happen to think that these studies overstate the relationship because they don’t control for nutritional status/depression/general stress levels (the studies did control for most other risk factors). On the other hand, doctors have been telling women that this wouldn’t have any impact on their ability to have children for 30 years, when there was absolutely no good evidence to support it. I know, I specifically asked this question, and was told not to worry about it. Ironically, that first study I mentioned was published about two weeks after my LEEP. I happen to think that too much of our society is focused on the health of hypothetical children at the expense of actual women, but most of the women undergoing these procedures don’t yet have, but do want to have, children in the future. It was a concern of mine, and I think for many of the women who undergo treatment, and finding out that I was at a significantly higher risk of incompetent cervix, with its attending risks of still-born, and very pre-term infants was like a punch in the gut. I’m mostly at peace about it now, but when I found out that I had been given misinformation about the risks because in thirty years they never bothered to do a good study, I was pretty angry. Had I known then what I know now about the rates of auto-regression, the likelihood of only slow progression, the safety of watchful waiting, the correlation with nutritional deficiencies, and the high rate of discrepancy between grading of abnormalities by pathologists (the more experienced the pathologist the less likely they are to grade something as moderately or severely abnormal) I would have persued different treatment. I would have insisted my samples be sent out for second and third opinions, and asked for quarterly follow-up while I improved my diet. And if I had eventually needed the Leep (likely, given my circumstances) at least I would feel better about it now because I would be sure that I had needed it. There has also been more research into rates of auto-regression of lesions. Abnormalities are graded CIN1=mild, CIN2 = moderate, CIN3 = severe/cancer in situ. In general, some sort of ablative/excisional procedure is recommended for all CIN2 or higher lesions based on the low(er) probability of auto-regression. Younger women are more likely to develop moderate dysplasia than older women because their cervical cells are less mature, but the regression rate for young adult women for CIN2 is close to 80% versus 40% of older women (I’m pretty sure about the 80% figure for adolescents, but it’s been awhile since I looked at the general stats for CIN2 – my apologies if it’s off a little). The other recent change is the technology available with the Pap smear. It used to just look for abnormal cells, now most doctors use a liquid-prep pap that also allows for relatively inexpensive HPV DNA testing that can not only detect whether you have HPV, but even the strain. Strains 16, 18, and three others cause 90+% of cervical cancers. Infection with any other strain, even if it causes mild abnormalities has an almost 0% chance of becoming cancer. Doctors can use this one of two ways. My previous PCP only did DNA testing if the cells were abnormal. I changed PCPs last year, and my new doctor ran the DNA testing regardless of whether the cells were abnormal or not. I’m not sure if she does this for all her patients or only because I have a history of abnormal results. The cells look normal, but I’m still carrying a high-risk strain. This pap smear was almost a relief in a way because now I know my chances of eventually truly needing a Leep were much higher. They used to think you could clear the virus completely; they now think your immune system is only capable of varying levels of supression. Women who can’t suppress the virus to invisibility are at a much higher risk, so I continue to need an annual exam. However, should I have three paps in a row that show a complete regression of the virus I would be comfortable moving to every other or even every third year screening. I haven’t read the studies in a long time, but I think there wasn’t a single case of cancer within the study period for the women with a double-negative test, which doesn’t mean that it will never happen, but it’s very unlikely. If you don’t know what your doc is doing, feel free to ask. To sum up, the guidelines aren’t changing because of a re-evaluation of existing knowledge, but because there have been huge advances in our understanding of how HPV causes disease, to whom it poses a risk, and the risks of over-treatment. The change in guidelines is good! It means we know a lot more than we did even just 5 years ago, and we can keep the risk of disease the same, while subjecting many fewer women to over-treatment (there are other risks to the exisional procedures beside pre-term birth – most involve infection or bleeding). This is exactly what should be happening. I just want to add a few notes for other women about things I discovered that many (most) GYNS won’t think to tell you. HPV is very common; infection with a high-risk strain (usually 16 and 18) greatly increase you’re chances of developing cancer, but even with the high-risk strains most women do not develop more than mild abnormalities. There usually needs to be some immune/nutritional deficiencies for problems to arise. Women who don’t eat the recommended daily serving of fruits and vegatables are at an elevated risk. Low folate, b12, selenium, and C are particularly correlated with the development of dysplasia. Stress and depression, with their attending immune suppression, are also linked to dysplasia. Homocysteine levels are elevated in women with dysplasia, and we appear to have increased telomerase activity in our cervical cells; which is probably also linked to stress/depression. If you are diagnosed, and they are recommending watchful waiting, try to eat well, exercise, and manage your stress (I know it’s not always in your control). If you can’t clear the infection on your own, don’t beat yourself up, some of us are just genetically unlucky with our immune systems.
kay
@Liz:
I want all recommendations to be based on the best science, not what we’ve always done, or the one in a million chance. I think that’s the best approach, for prostate cancer, ear infections or breast cancer.
I want an honest discussion, one that allows for the role of insurers to look for ways to cut costs, but also looks at the rest of the for-profit system. There’s a financial incentive for providers to test yearly. That’s fact.
I want to look at all the factors and make the best decision, not just go right to “treat and test”.
I wrote earlier that I have a huge family history of diabetes. If I said to you that all women should be tested for signs of that (impending, maybe) disease once a year, would you agree with that? We’d catch more diabetes. But where does this approach end?
I guess I see this as giving patients more power. I want to know the actual risk for these diseases, rather than a blanket approach for “women of all ages”. I want to direct my own care more than that, and I’m happy to have any new information to base my decisions on.
kay
@Liz:
Too, Liz, I would just add that I knew the breast cancer stats were measured in a lifetime. I knew the incidence was clustered later, so a “1 in 6” chance means “over a lifetime” not between ages 21 and 49, or whatever, so testing more frequently as people get older makes sense. I knew that because I don’t just accept recommendations, because I learned to ask a lot of questions at the doctors office with kids, and I like doing that. I want to know.
I’ve had success asking all kinds of things. I was shocked when I started asking if the doctor was was going to take the same approach to treating a childhood illness regardless of 1. whether I agreed to have the kid tested, and 2. the results of the test. Sometimes the answer is “yes”.
Might skip the test, then, right? If we’re treating regardless?
Captain Goto
Me, I’m amazed that this isn’t a dead thread yet.
Turns out I count Ms. Hickey as a dear friend. Helluva lady, and a true progressive.
Joel
@EdithL: Great comment, Edith. Hopefully one that people will take note of.
R-Jud
@EdithL:
Thanks for that comment, Edith. I know people who could probably use this info.
HyperIon
@Steph wrote: I’m really, really suspicious of cholesterol screening and statins…but that’s probably another thread.
But I think the docs are coming around. More and more data show that yes, the statins reduce LDL. NOW they are saying that lowered LDL prevents “only” about 1/3 of heart-attacks. So obviously lowering LDL levels is not the complete answer.
But not surprisingly, during the time that everyone was gung-ho about statins, the instrument makers came up with reasonably priced devices to measure LDL in the docs office. So it became easy and cheap to measure this and someone provided a target level, which was lowered at least once pushing more “normals” into the “high or borderline high” category. BigPharma was thrilled, of course.
Now that more data are available and a better fundamental understanding of what causes plaques to rupture exists the love for statins is in decline. Also there is now much better data on how cholesterol is a necessary participant in many important processes…like immune response.
Anyway my main point is that we tend to use the tools we have even when they might not be appropriate.
Interestingly the cost of mammogram instrumentation has been decreasing steadily so more smaller groups can afford it. Like someone said upthread, after it’s paid for it becomes a revenue generator…but only if people are told to get screened.
What we need is a set of national “standards of care” that inform the medical establishment about best practices. Instead this role is often played by pharma reps or instrument sales people who have ZERO interest in the patient and/or costs. It would seem like this might address malpractice suits as well. It the doc followed the standard of care, that would qualify as an affirmative defense. IANAL and heard this somewhere ;=) But it is a contrast to the world we live in now where docs order lots of tests to cover their asses.
HyperIon
@Joel wrote: prostate cancer affects all men by the time they reach their 90s. That is, a 100%
And I heard a talk at UW Medicine recently that mentioned biopsying guys in their 30s. About half had detectable levels of cancer cells in their prostate. Some of our tools are very sensitive but detection is not always a good thing. As always someone has to interpret the meaning of the test result.
More data!
HyperIon
@Jon H: They also want to stop teaching women how to self-examine.
Who is “they”? Link, please.
And does a women need someone to teach her how to do a self-exam? It looks pretty easy. Do you think “they” will try to destroy all descriptions of the procedure in textbooks and on the web or the many posters I’ve seen that demonstrate it clearly.
HyperIon
@EdithL wrote interesting stuff about HPV
Thanks for all the info. Here is a link to an extremely detailed presentation on HPV and PV in other animals and the development of the vaccine. Really good IMO. It gives a good sense of how scientific progress is achieved: by many people working together for a long time on a problem.
HyperIon
@HyperIon: oops…dead thread.
Rebecca
@Luthe:
I’m with you, man. Those things f*cking HURT. The only consolation I have is that I don’t have to pay for them, thanks to my You Are Poor And We Don’t Need You Making More Little Poor People Or Spreading Veneral Diseases So Plan Parenthood Will Not Charge You Money For Most Stuff card. (Sadly, I may have to postpone the HPV vaccine thing until I have more money, as it’s one of the few things my You Are Poor doesn’t cover. Probably because the only person who would benefit from it is ME.)
Steph
@HyperIon: “Anyway my main point is that we tend to use the tools we have even when they might not be appropriate.”
Yes, I think Michael Pollan said it’s like the guy who drops his keys in the dark parking lot, but looks for them under the streetlight because that’s where he can see. Cholesterol can be measured, so we tied it to heart disease. But half of people who have heart attacks have “normal” cholesterol, and half of those with “high” cholesterol don’t have heart disease. And who knows the long-term affects of statins?
It’s extremely frustrating.
Steph
@HyperIon: This was news about a year ago – a large international study found that breast self exams did not decrease mortality rates, and the researchers said that doing breast self exams can lead to unnecessary biopsies, etc.
I read in a couple women’s magazines, around last winter/early spring, that you don’t need to bother with bse – they cited the study.
But no, no one is going to go into women’s showers and take away their reminder cards.
Mayken
@MattR: My problem with it is entirely in the cost/benefit analysis – it is their opinion that potential harm to women going through scares and false positives etc and the actual monetary price of the tests and treatments that follow outweigh the benefits to women in reduced mortality. There is apparently about the same mortality reduction in the two age groups (40-49 and 50-59) but to save 1 extra life in the younger cohort one has to screen 600 more women. That seems to be a small number to me and to a lot of other people, including doctors. By contrast, the 60+ cohort saw twice the mortality reduction as the younger two age groups. So why is it acceptable to say the 50+ crowd should get mammograms but not the 40+?
Also, as I mentioned above, when a cancer is found earlier the treatment is less aggressive and invasive (e.g a smaller tumor allows the surgeon to do a lumpectomy vs a full mastectomy, thus saving the woman recovery time as well as being better for her emotionally.) The recommendations don’t seem to have taken anything other than reduction in mortality into account. The quality of life between diagnosis and death is also very important.
Mayken
@Jackie: My mother WAS a low-risk person. She had no family history and no other indicators for breast cancer. In fact, she was very firmly in the category that should be at LOWER risk due to having had all of her children before the age of 35 and breast feeding them.
The fact that her doctor was so passionate about women getting their mammograms was the ONLY reason she was screened at all.
I totally understand that different guidelines apply to women like me with a family history or other indicators.
Mayken
@Jackie: Oh, and thank you for the suggestion about talking to my doctor about MR. That is something I will seriously research and discuss with her.
Mayken
Oops, I think both of us meant MRI!
Mayken
@kay: Well, considering the high incidence of diabetes in the general population and the high risk of health issues that go with the disease vs the relatively low cost and risks of testing (that is to say, not a lot of false positives for high blood glucose!) I personally think this would be a good thing.
Sorry for so many replies in a short time. I just got back and got a chance to read the tread thoroughly! Y’all have most likely moved on. ;-)
ms hickey
I am the woman in the story, Ms. Hickey. I consider myself to be a Poster Child for Early Detection. Based on the type of cancer that I had (and I regret not sharing that in the letter), a progression would have meant losing significantly more breast tissue (and I don’t have much to lose, so I am meaning most if not all of the breast). Follow-up care would have been radiation treatments, in addition to the tamoxifen (which I am fortunately taking with few side effects). A more aggressive surgery and treatment would have resulted in disfigurement, more time off from work, more help needed at home during recovery, etc. I think the main flaw with the recommendation, in my mind, is that it only looked at MORTALITY, not outcomes. I would have a mammogram every week if it saved one woman from what I went through.
ms hickey
I am the woman in the story, Ms. Hickey. I consider myself to be a Poster Child for Early Detection. Based on the type of cancer that I had (and I regret not sharing that in the letter), a progression would have meant losing significantly more breast tissue (and I don’t have much to lose, so I am meaning most if not all of the breast). Follow-up care would have been radiation treatments, in addition to the tamoxifen (which I am fortunately taking with few side effects). A more aggressive surgery and treatment would have resulted in disfigurement, more time off from work, more help needed at home during recovery, etc. I think the main flaw with the recommendation, in my mind, is that it only looked at MORTALITY, not outcomes. I would have a mammogram every week if it saved one woman from what I went through.
kay
@Mayken:
1000 women undergoing annual mammography for 10 years starting at the age of 50 years. These include:
Benefits
* 1 woman will avoid dying from breast cancer
Debits
* 2–10 women will be overdiagnosed and treated needlessly
* 10–15 women will be told they have breast cancer earlier than they would otherwise have been told, but this will not affect their prognosis
* 100–500 women will have at least 1 “false alarm” (about half these women will undergo biopsy)
The younger the woman, the less responsive the test is, and the more likely she is to have an unneccesary biopsy.
2-10 women will be treated needlessly.
Cancer treatment. Itself harmful.
The reason they don’t like self-exam is because younger women self-report to the physician and the physician tends to order a biopsy.
Younger women are undergoing so many biopsies. The numbers above are for false-positive biopsies in women over 50. Is this what we want? Is that really humane and sensible for women?
kay
@Mayken:
100-500 out of 1000 women with a false positive and half of them will have a biopsy ordered.
That’s in an over-50 population.
This blanket testing is not without cost, and I’m not talking about money, although I will happily talk about money, because money is a legitimate part of the risk-benefit analysis for health care.
Whether we want to admit it or not.
Steph
@ms hickey: Thank you for sharing your story, and I’m glad your cancer was caught when it was.
Sending prayers for your continued good health.
Mayken
@kay: I think you are missing a benefit, as the data-crunchers did, too, which is reduction in the number of women who had to undergo the harsher treatments due to finding the cancer before it becomes metastatic and therefor allows for much less aggressive treatment. Did they even look at the reduction in mastectomy and lymphectomy in these age groups? How about the patient not having to go through the harshest chemo and radiation treatments?
Reduction in mortality is not the only yard stick by which we can judge the efficacy of the screening.
Mayken
@ms hickey: Thank you! That is exactly the same point I was trying to make above and you did much more eloquently.
Mayken
@kay: A lot of false positives are due to poor training on the part of the tech. Better training is in order.
Better tests would be even better, of course!